Do You Know Anyone with Rheumatoid Arthritis?

If you’ve followed my blog for a while, you know that I have Rheumatoid Arthritis. A while back, I heard from Healthination, Inc, asking me if I was interested in being featured in a series of educational videos they were creating about RA. I was honored to be asked, but I was not only dealing with deadlines, I was also in the midst of coping with other health issues at the time (remember my stint as the turkey at the Mayo Clinic?). Reluctantly, I turned them down, but they found a far better spokeswoman than I ever could have been in cookbook author and arthritis warrior Melinda Winner. Believe me, cooking with RA has its challenges (Melinda has a great website devoted to the subject), and I love her videos that show how Melinda has learned not just to live with RA but to thrive in spite of it. If you know someone with RA, I think these videos will help you understand what her (or his) life is like a bit better.

I do have a couple of thoughts I’d like to add to what Melinda has to say, both for the RA sufferer and those who care about her. I guess what concerns me most about showing people who have overcome adversity of any sort is the guilt they can induce in people who aren’t at that point in the process yet. Note that Melinda has had RA for a long time. She wasn’t this powerhouse right out of the gate. (I’m personally still waiting to become a powerhouse!). Before RA is under medicated control, exercise, courage, and good spirits may simply be impossible, and that’s okay. Give yourself a break!

While Melinda stresses the need for exercise–and I agree–someone with RA has to be very cautious about the sort of exercise she does. All I need is a walk through a big box store to give me enough pain in my ankle to make sleep impossible, but the recumbent bike or the pool work just fine. It’s a matter of experimentation and there may be times when a flare is so bad that rest makes more sense than exercise. An inflamed joint should not be exercised and until the right medication is found to control inflammation, physical activity may be very limited. Before the right medication came along for me, I wrote two entire books using voice recognition software. I couldn’t type or cut a piece of pie or pull the sheets up to my chin. Exercise? I don’t think so! So if that’s where you are in the disease process, talk to your doctor about what you can and can’t do and don’t let anyone give you a guilt trip about your need to baby your joints.

Everyone is different. I receive an infusion drug for RA and there are always several other folks getting their meds at the same time I do. I marvel at how different we all are in our symptoms, our abilities, and the benefit–or lack of benefit–we get from various medications. So, be inspired by amazing women like Melinda, but be gentle with yourself or with your loved one who has RA. Learning to cope with chronic illness is a journey. Sometimes your pace of physical or emotional recovery may seem glacial, but with the new treatment options available and a better understanding of this disease, your chance of living a full and comfortable life are excellent. I know that for a fact.
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Published on October 29, 2010 08:47 Tags: diane-chamberlain, melinda-winner, rheumatoid-arthritis
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message 1: by Brenda (new)

Brenda Diane, my husband has just been diagnosed with rheumatoid arthritis. He has been on medication for 3 weeks now, and in the last week has shown slight improvement, but is always exhausted (drugs), and gets incredibly frustrated because he can't do what he wants to do. I will read him your words, and also look up Melinda's information too. Thanks so much...:)


message 2: by Diane (new)

Diane Chamberlain brenda, I understand how your husband feels. it's such an adjustment. I hope his has been caught before there's much damage. Then there's real hope he can get back to doing the things he loves to do. the disease itself comes with enormous fatigue, but I am very rarely tired now that I'm on the right drug regimen. it all takes time, and if this drug doesn't give him enough reelief, there are others to try. I wish you both the best.


message 3: by Stephanie (new)

Stephanie I totally understand. I have systemic lupus along with two other autoimmune diseases. The pain and fatigue are an everyday occurrence. I agree with you Diane that it is an adjustment. I have found that I have days that I "grieve" for the old me. Brenda, please let your husband know that it is normal to be frustrated, exhausted, in pain and even angry. It took five years for my doctors to find the right meds for one of my diseases but in turn it affects the others so we are constantly tweaking doses. Please let your husband know he is not alone and thank you Diane for discussing such an important topic.
Stephanie


message 4: by Brenda (new)

Brenda Thank you so much, Diane and Stephanie. It helps a lot to know there are people out there like you two, who understand, and can help..:)
All the best with your own health..xo


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